What Do Midlife Women Expect From Their Gynaecologists?

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WHAT DO MIDLIFE WOMEN EXPECT FROM THEIR GYNAECOLOGISTS? Janine O'Leary Cobb, MSc, Founder/Editor, A Friend Indeed Publications Inc., Montreal, Quebec

ABSTRACT

There is general consensus that women approaching menopause require more and better information. There are also research findings demonstrating that mid-life women are not getting the kind of information they want fram their gynaecologists and that, in fact, health care providers are not primary sources of information for the vast majority of menopausal women. Ie is impossible for physicians to respond to the need for information without a clear idea of what women want to know. This article does not purport to represent the needs of women faced with a spedfic medical problem. However, based on a survey of readers of the international menopause newsletter, "A Friend Indeed" --coupled with letters fram thousands of women who have written to the editor over the /nst 13 years-this article describes what the average menopausal woman looks for when visiting her gynaecologist. RESUME En general, on s'entend pour dire que les femmes ont besoin d'etre davantage et mieux informees it I'approche de Ia minopause. Des recherches ont egalement demontre qu'au milieu de leur vie, les femmes ne re~oivent pas I'information recherchee aupres de leur gynecologue et que les dispensateurs de soins de sante ne sont pas vraiment les principales sources d'information de Ia majorite des femmes menopausees. Les medecins sont dans l'impossihilite de reporuire ace besoin d'information sans avoir une idee precise de ce que les femmes veulent savoir. Cet article ne vise pas it faire etat des besoins des femmes aux prises avec un prob!eme medical en particulier. 11 demt pluwt ce que Ia femme minopausee moyenne recherche lorsqu'eUe consulte son gynecologue, d'apres un sandage mene aupres des lectrices du bulletin international sur Ia menopause, A Friend Indeed-sans campter le courTier envoye it Ia redaction par des milliers de femmes depuis treize ans.

J soc OBSTET GYNAECOL CAN 1997;19:619-24

KEY WORDS

Menopause, hormones, dedsion-making, alternatives, doctor/patient relationships.

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impossible to predict the course of a natural menopause, this would call for unusual prescience on the part of her physician. It is no big secret that the training of gynaecologists allots very little time to natural menopause. (I use the word "menopause" in the lay sense of the months or years before and after the last menstrual period).

he average midlife woman believes that her gynaecologist is familiar with the whole gamut of complaints associated with natural menopause and that he or she could (if only they would) explain exactly what is going on in that woman's body right now, as well as what she might expect in the future. As it is

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, , , anger; sensitivity to touching by others ("touch impairment"); inexplicable panic attacks; bladder inflammations; vulnerability to vaginal or urethral infections; anxiety and loss of self-confidence; depression-or depressed feelings-that cannot be shaken off; onset of migraine headaches; easily wounded feelings; crawling skin (formication); disturbing memory lapses; and fatigue. 2 A similar list was recently compiled by members of a menopause support group which meets on the Internet. The second list contains 31 telltale signs of menopause and was put together in the hope that it could be printed on a card to be kept, for quick reference, in the desk drawer of every physician in North America.) This second list included two additional complaints, namely gum problems and burning tongue, and tacked on an important proviso: some of these signs may also be symptoms of such other medical conditions as hypothyroidism, diabetes, or depression with another aetiology. Most menopausal complaints come and go. It is rare to hear from a woman who experiences more than two or three at anyone time. However, because a woman often imagines horrifying disease before she thinks of menopause-and given the range of effects that menopause may exert- it is important for her to articulate all of the changes that she notices in order to be reassured that these are "normal." Listening to a woman takes up valuable time, but her expectation is that her doctor will not only listen but will hear what she has to say. (Most patients are interrupted by their doctors within the first 18 seconds of beginning to explain what is wrong with them).4 Once convinced that her complaints are "normal," most women want to know what to do about them. Of course, the question, "What can I do?" can be heard in many ways. Too often, it is received as, "What can you do, doctor?" That was not the question. The appropriate response is twofold: first, to pay attention to that woman's particular situation, followed by useful information about steps that the woman can take to make herself feel better. In other words, the "I" signals a request for individualized attention to her history-family and personal-and, thus, to her unique risk factors. One of the most common complaints I hear is about a doctor's failure to ask about a woman's history. There are vast numbers of health care providers who have

We know that women approaching or experiencing menopause are not hugely satisfied with the medical advice they are getting.l Physicians who know a great deal about the natural course of menopause are hard to find. Some have acquired a certain expertise because of a practice that includes many mid life women; a few specialize in this area of gynaecology. If you are not one of these few, you may find it helpful to know what these women want from you. Reassurance is the first requirement of the average woman facing menopause. She is not ill: she is confused and puzzled. She wants to know that what she is experiencing is fairly common at her age, in this country, that it will not last, and that if it should become intolerable (whatever it may be), her doctor will have something to suggest. Historically, there has been little consensus about "normal" menopausal complaints beyond the standard trio of irregular periods (shorter and lighter, or longer and heavier), hot flashes/night sweats, and dry vagina (or painful intercourse.). Over the last few years, more recognition has been given to a range of peripheral complaints that women consistently report in addition to, or in place of, these. Here are the most common, extrapolated from letters sent to the menopause newsletter, "A Friend Indeed:" Problems getting to sleep and/or weird dreams (often of birth or of menstrual flooding); waking in the early hours of the morning; sensory disturbances (vision, smell, alterations to taste); funny sensations in the head (described as similar to an electric shock); lower back pain (often due to crushing vertebrae); onset of new allergies or sensitivities; fluctuations in levels of sexual desire and/or capacity for sexual response; annoying itching of the vulva; sudden bouts of bloat; chills or periods of extreme warmth; indigestion, flatulence, gas pains; rogue chin whiskers; overnight appearance of long, fine facial hairs; bouts of rapid heartbeat; crying for no apparent reason; aching ankles, knees, wrists or shoulders; waking up with sore heels; thinning scalp and under-arm hair; graying scalp and pubic hair; mysterious appearance of bruises; sudden inability to breathe ("air hunger"); frequent urination; urinary leakage (when coughing, sneezing, or during orgasm); prickly or tingly hands with swollen veins; lightheadedness, dizzy spells, or vertigo; weight gain-and in unusual places like the back, breasts, abdomen; sudden and inappropriate bursts of

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, , , such a thorough belief in the benefits of hormone therapy for midlife women that they often prescribe without pausing to take a detailed history. This is one explanation for a notoriously high rate of non-compliance. If the woman has a family history of breast cancer, she may be understandably wary of hormones. If she has had bad reactions to other kinds of medications, she may be reluctant to try a new drug. History-taking may also ferret out the women (estimated at more than 15%) with a history of physical or sexual abuse of some kind. 5These women may have dyspareunia that no amount of estrogen can alleviate. A detailed history may also flag those women who will not, or should not, accept hormone therapy. (In a recent random review of contra-indications to hormone therapy among women aged 40 to 55 belonging to an HMO in the USA, it was found that nine percent of the women had an absolute contra-indication and that 44 percent had either an absolute or a relative contra-indication in their medical records 6 ). These are only some of the reasons why hormones may not be acceptable. 7 Whether or not hormone therapy is deemed appropriate, there is a great deal that the average woman can do to help to manage her own menopause. She may need encouragement to stop smoking or to start exercising regularly (brisk walking at least three times weekly for at least 30 minutes 8 ). She may need to examine her diet critically - learning how to increase the calcium and reduce the fats. She may benefit from vitamin supplements. (Most women will be glad to accept a brochure, or a referral to a dietitian or nutritionist). Some doctors report success with prescriptions that specify behaviour modifications that promote health. The woman will also want to know about other resources. Physicians are always pressed for time and not all women are happy with printed materials. There are new and effective audio and video programmes that review the decision-making process. 9 Perhaps there is a local nurse practitioner or women's health clinic where additional questions can be addressed. There are also many, many publications (preferably not supplied by a drug company) containing additional information. For most women, this would be enough. But sometimes, information, regular exercise, and a healthy diet are not enough. Sometimes the hot flashes and night sweats are simply intolerable. She may need

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information about the short term use of hormone therapy. She may also need to know that, should she choose to discontinue the therapy in a few months or a few years, she will have your guidance and support as she slowly weans herself from reliance on hormones. Should she decide not to take hormones, she may ask about alternatives. Some of these are part of the medical armamentarium, like clonidine or Bellergal, but most are relatively untested and often unknown. It is generally accepted that calcium supplements, in conjunction with regular exercise, can help to maintain bone mass. iO It is not so well known that paced respiration ll or acupuncture l2 helps to alleviate hot flashes; that adding soy to the diet can prolong the menstrual cycleD and minimize the effect of the hot flash;14 that evening primrose oil may alleviate night sweats;15 that vitamin E once a day may reduce the risk of cardiovascular disease;16 that daily doses of cranberry juice can prevent urethritis; 17 and that doing Kegel exercises can relieve mild urinary incontinence. ls There are many other alternative remedies that remain promising but untested. There mayor may not be a placebo effect derived from ingestion of a herbal tea or a vitamin supplement but, provided that the woman does not harm herself by taking too much or by ignoring potential harmful interactions, what harm can it do? Women need to know that their health care providers support and encourage the use of remedies which do no harm and which make a woman feel better. Short term hormone therapy and alternative remedies are not the only options. In some cases, a woman's risk of incipient heart disease or osteoporosis is too glaring to ignore. There are too many women unaware of their above-average risks of heart disease and osteoporosis-perhaps resulting from an induced menopause or a premature menopause. They might have a strong family history of osteoporosis or may have other characteristics that predict vulnerability to this condition. 19 They might have a significant family history of heart disease (We all have a family history of some heart disease; those at risk will have parents debilitated before the age of fifty in the case of the father, and before sixty in the case of the mother). What about the women who are at increased risk of osteoporosis because they drink too much alcohol? These are the women who need information about long term hormone therapy. When long term hormone therapy is indicated, a woman needs to know that her physician is both

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, , , how acceptable are the alternative risks and how desirable are the benefits, given their probabilities of occurrence and the nature of the potential harm? It may well be that, given the choice, many if not most women wouUl prefer to suffer the morbidity and risk the mortality of heart disease rather than endometrial or breast cancer. 21

knowledgeable and flexible; she needs to be told that hormone regimens are infinitely variable and can be adjusted to suit her unique biology, and that working together, it is possible that solutions can be found to satisfy that patient over a period of years, perhaps decades. A woman wants to know that her physician's response is custom-tailored. She is already aware that hormone therapy is not the only possibility, and that she may get cursoty treatment in the doctor's office. A recent editorial in the journal Menopause comments: "Significant numbers of women complain that they have been neglected by a medical system in which estrogen is the sine qUil non of treatment at menopause."2O We have good statistics about the protective powers of hormone therapies and good statistics certainly point us in the right direction. But the application of that knowledge must depend on an individualized assessment and discussion of a woman's personal risks of heart disease, of osteoporosis, and of cancer. More and more women are aware of the discrepancy in risk between heart disease and breast cancer or, for that matter, osteoporosis. More and more, we hear that the benefits ofhormone therapy far exceed the risks. But that does not end the matter.

Four years ago, I hosted a round table at the North American Menopause Society meetings in San Diego. The physicians at my table told me that they considered it a failure on their part if a patient refused hormone therapy. This surprised and disturbed me. It returned to haunt me when I read the article on hormone therapy in the June 26,1995 issue of Time Magazine. 22 In that article, an eminent gynaecologist commented that, by taking hormone therapy, a woman was "increasing the risk of getting breast cancer at age 60 in order to prevent a heart attack at age 70 and a hip fracture at age 80." He then added, "How can you make that decision for a patient?" Physicians who are truly aware of the complexities of decision-making are less and less likely to opt for unilateral decision-making. Relative risks apply to a population as a whole. To use these as a rationale for treating an individual woman is unacceptable. There are too many other factors to take into consideration, and too much at stake. Women want to know that their menopausal complaints are fairly common and what they can do to ameliorate the situation: what foods to eat, what kinds of exercise to take, and what other resources to use for additional information. They want to know what particular risk factors they should be aware of as a result of their family and personal histories-social and sexual, as well as medical. They need to know that hormone therapy is appropriate for some women, not all. If they choose to take hormone therapy, they want to know, and deserve to know, about potential side and long term effects. If they wish to explore alternative remedies before coming to a decision about hormone therapy, they need physicians who will support this. Women want to know that their gynaecologists are flexible and supportive partners in choosing from a variety of solutions, according to each woman's particular needs, and that decisions about treatment will be mutual decisions.

Even after research data have been obtained and published, the weighing of risks versus benefits has an irreducibly subjective element. Take, for example, the statement. .. "The possible risk of developing breast cancer is probably outweighed by the improvement in quality and duration of life in women receiving hormonal replacement therapy ... " Now if I were a woman at risk for this slight increase in occurrence of breast cancer, I know how I wouUl respond to the claim that it is "of borderline significance:" "It may be of borderline significance to biostatisticians, but not to me. " To say that the increase in risk is slight is simply to say that the probability of occurrence is low. But the severity of harm is great for those who are unlucky enough to be in the category of "slightly increased risk."

The probability of risk is only one of two objective dimensions of risk assessment. The other objective dimension is the magnitude of harm posed by the risk. The subjective aspect varies with each individual:

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, , , This article is adapted from an oral presentation at the Plenary Session on "Women's Knowledge about Menopause," 6th Annual Meeting of the North American Menopause Society, San Francisco, September 21 to 23, 1995.

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